Back in December of 2008, I linked to a terrific article that Roger Ebert wrote about his college classmate, William Nack. Ebert lost his lower jaw and the ability to speak four years ago, but he has never stopped writing or watching movies. In the latest issue of Esquire, Ebert is profiled by the talented Chris Jones:
Roger Ebert can’t remember the last thing he ate. He can’t remember the last thing he drank, either, or the last thing he said. Of course, those things existed; those lasts happened. They just didn’t happen with enough warning for him to have bothered committing them to memory — it wasn’t as though he sat down, knowingly, to his last supper or last cup of coffee or to whisper a last word into Chaz’s ear. The doctors told him they were going to give him back his ability to eat, drink, and talk. But the doctors were wrong, weren’t they? On some morning or afternoon or evening, sometime in 2006, Ebert took his last bite and sip, and he spoke his last word.
Ebert’s lasts almost certainly took place in a hospital. That much he can guess. His last food was probably nothing special, except that it was: hot soup in a brown plastic bowl; maybe some oatmeal; perhaps a saltine or some canned peaches. His last drink? Water, most likely, but maybe juice, again slurped out of plastic with the tinfoil lid peeled back. The last thing he said? Ebert thinks about it for a few moments, and then his eyes go wide behind his glasses, and he looks out into space in case the answer is floating in the air somewhere. It isn’t. He looks surprised that he can’t remember. He knows the last words Studs Terkel’s wife, Ida, muttered when she was wheeled into the operating room (“Louis, what have you gotten me into now?”), but Ebert doesn’t know what his own last words were. He thinks he probably said goodbye to Chaz before one of his own trips into the operating room, perhaps when he had parts of his salivary glands taken out — but that can’t be right. He was back on TV after that operation. Whenever it was, the moment wasn’t cinematic. His last words weren’t recorded. There was just his voice, and then there wasn’t.
Now his hands do the talking. They are delicate, long-fingered, wrapped in skin as thin and translucent as silk. He wears his wedding ring on the middle finger of his left hand; he’s lost so much weight since he and Chaz were married in 1992 that it won’t stay where it belongs, especially now that his hands are so busy. There is almost always a pen in one and a spiral notebook or a pad of Post-it notes in the other — unless he’s at home, in which case his fingers are feverishly banging the keys of his MacBook Pro.
He’s also developed a kind of rudimentary sign language. If he passes a written note to someone and then opens and closes his fingers like a bird’s beak, that means he would like them to read the note aloud for the other people in the room. If he touches his hand to his blue cardigan over his heart, that means he’s either talking about something of great importance to him or he wants to make it clear that he’s telling the truth. If he needs to get someone’s attention and they’re looking away from him or sitting with him in the dark, he’ll clack on a hard surface with his nails, like he’s tapping out Morse code. Sometimes — when he’s outside wearing gloves, for instance — he’ll be forced to draw letters with his finger on his palm. That’s his last resort.
While you are at it, dig this piece by Ebert on food–Nil by mouth:
I mentioned that I can no longer eat or drink. A reader wrote: “That sounds so sad. Do you miss it?” Not so much really. Not anymore. Understand that I was never told that after surgery I might lose the ability to eat, drink and speak. Eating and drinking were not mentioned, and it was said that after surgery I might actually be able to go back to work on television.
Success in such surgery is not unheard of. It didn’t happen that way. The second surgery was also intended to restore my speaking ability. It seemed to hold together for awhile, but then, in surgeon-speak, also “fell apart.”
A third surgery was attempted, using a different approach. It seemed to work, and in a mirror I saw myself looking familiar again. But after a little more than a week, that surgery failed, too. Blood vessels intended to attach the transplanted tissue lost function, probably because they had been weakened by radiation. A fourth surgery has been proposed, but I flatly reject the idea. To paraphrase a line from “Adaptation’s” orchid collector: “Done with surgery.”
During that whole period I was Nil by Mouth. Nobody said as much in so many words, but it gradually became clear that it wouldn’t ever be right again. There wasn’t some soul-dropping moment for that realization. It just…developed. I never felt hungry, I never felt thirsty, I wasn’t angry because the doctors had done their best. But I went through a period of obsession about food and drink. I came up with the crazy idea of getting some Coke through my g-tube. My doctors said, sure, a little, why not? For once the sugar and a little sodium wouldn’t hurt.
[Photo Credit: Ethan Hill]
Read this last night and it blew me away. I posted a link to it on my facebook and it got some reaction.
I don't throw around words like "inspiring"...but to hear/read Ebert talk about how "happy" and "lucky" he considers himself, I really don't have the words. They broke the mold with Ebert, we're lucky to have him.
Agreed
Yikes ... that's a bit unnerving to see/read .... but bully for Ebert for his take on life.
Ebert's a treasure, and I feel sorry for anyone who thinks of him as only the "thumbs" guy. His blog is... well, about the only one I like more than this one.
The photo on the Esquire cover surprised me not because of what disease and surgery have done to the bottom of his face -- I'd known about that -- but because of how little the top of his face and head resemble the appearance people are familiar with.
It's impressive to see him so open about what he's gone through.
It's wonderful that the internet allows someone like Ebert to remain so active. He's in a way more vocal now than ever between his blog and non-stop, and wide-ranging, tweets. He's definitely an inspiration.